Mimi's Toast examines the toll gluten takes on generations of one family. The author looks back at the terrorized life her
maternal Grandmother Mimi endured as a paranoid schizophrenic, brought on by gluten intolerance. The author explores her own physical health issues -- including being hypothyroid and severely anemic -- that were caused courtesy of gluten.

Tuesday, December 29, 2009

How many people are suffering from Celiac's Disease? At least 1 in every 133 Americans. What is that tally? 2,115,954 people. That number does not include those of us believed to have a gluten insensitivity. That number has been estimated to be as high as 140 million Americans. Surely that includes someone you know, or you?

Read that number again. Say it out loud. 140 million.

Know how many Americans actually got a Celiac's Disease diagnosis last year? Only 40,000 people. The rest of you are being given flat out wrong diagnosis's from your doctors, year after year after year. Scarier still, some of you never even have a single symptom that would hint that you have a gluten issue. That is why it is vital to get tested if a family member has an issue with gluten. You could be killing your guts and not even know it.

If you have a few of the following symptoms and your doctor never thinks to test you for Celiac's, fire him. If you have some of these symptoms and you never try a month with no gluten to see if you feel better, fire yourself as director of your own health care.

I know, I know, I can be too blunt. I am blunt but I got that way after being here for 44 years and never getting medical care that would have helped me until very recently. It has made me a little crabby. That and wheat. Wheat definitely makes me crabby.

Here are some of the symptoms of Celiac's or a gluten sensitivity. Please know that since every body is different, we can all have different symptoms. For example, I had ataxia, which is a balance disturbance. I would literally run into walls (and no, I was not drinking). My husband would hear a loud BANG followed by a loud cuss word. He would ask, 'what's wrong, honey?" And I would have to reply that I ran into a wall. Again. Really it was more like falling into a wall since my balance was so awful. I had bruises all over the place. It wasn't pretty. It too made me crabby.

Symptoms:

The main signs and symptoms associated with gluten intolerance (celiac disease) are due to the inadequate absorption of nutrients from food. This condition results in:

Some of the signs and symptoms associated with gluten intolerance occur as a result of the malnutrition and vitamin deficiencies often caused by the condition. These may include:

Anemia (low number of red blood cells) and fatigue. Due to a lack of absorption of vitamin B12 and iron. Weight loss. Due to poor absorption of carbohydrates, proteins and fats. Bone pain, bone weakness and osteoporosis. Due to a lack of absorption of vitamin D. Swelling (often around the ankles and feet). Due to fluid retention Tingling and numbness from nerve damage. Due to deficiencies of B12 and thiamine.

Monday, December 28, 2009

Okay, technically this restaurant is in Cedar Park but close enough to the "big city" to call it an Austin establishment. I heard about it from a Facebook friend and we went to the restaurant on the very day we heard about it.

It is worth the drive.

The owners' son was given a diagnosis of Autism at a very young age. The couple researched and researched and decided going gluten-free and dairy-free was one of the best ways to help their son. IT WORKED!

Their son is now making high marks and attends public school. If that isn't an outstanding testimonial about how harmful gluten and dairy can be to some of us -- as well as a testimonial for how great we can feel off that junk -- then I don't know what is.

Thanks to Whole Foods, I have stumbled across a wonderful gluten-free treat that I wanted to share. Remember graham crackers? That is one of the things I pine for that I thought I would never get to eat again.

Thank heavens I found something called "S'Moreables" at Whole Foods. The brand is Kinnikinnick. These "graham crackers" are better than the gluten-filled kind!

I put a glob of Burleson's Honey Spread on the crackers and I am good to go.

My favorite thing about these graham crackers -- well my second favorite thing really, as my first favorite thing is that they are gluten free -- is that the box actually has a recipe on the back on how to make s'mores in the over!

This cracks me up as I have never heard of making s'mores in the oven. I also get a chuckle out of this recipe as I can't cook to save my own life but now at least I can make an oven s'more.

Sunday, December 27, 2009

If we meet one another on the street and you catch me staring at your eyebrows, I apologize in advance. I can't help it! I see the results of gluten intolerance written all over some of your faces . . . and your big bellies.

Gluten intolerance can lead to all sorts of hideous autoimmune diseases, including being hypothyroid. I am hypo, or was hypo until I found a wise doctor who actually believed me and got me on the correct medicines (dessicated thyroid + adrenal support with low dose cortisol). Your thyroid can be run down thanks to a sensitivity to gluten.

If you are hypothyroid, you might very well have lost the outer edges of your eyebrows. I look for that now when I meet people. Those whom I care deeply about I might mention it to, but mostly I am learning to try to keep my mouth shut because I find that many (most?) people do not want to hear that they have an autoimmune problem or that they may, in fact, have to give up bread (and ketchup and cake and cookies and beer and, and, and the list goes on)

A sensitivity to gluten can make you too fat and puffy (as well as it makes some folks super skinny and once was called "the wasting disease"). I watched a very over-sized family near us at the Pappadeaux's restaurant where we stopped on our way home after enjoying Christmas with the family in Baton Rouge.

I once would have thought not nice thoughts about this family's lack of self-control. As I watched them eat two baskets of complimentary bread, followed by fried everything and finishing off with a flour-laden desserts, I felt sorry for their lack of information.

As my wise father tells me all the time, knowledge is power and I thankfully have the knowledge that gluten is lethal for me. Thus, we sent our free bread basket back and didn't touch that poison.

We ordered non-fried food and we left without partaking in floury desserts. We nearly skipped out of the restaurant because we felt good after eating a light meal . . . the overly-large family rather waddled out the door.

Instead of judging them, I just felt bad for them and hoped that one day they learn about gluten and what it does to a body. Nothing good!

My grandparents were not wealthy people. Mimi's husband -- Cecil, my grandfather -- worked his entire professional life as a telephone linesman. I can't hear Glenn Campbell's song "Lineman for the County" without thinking of Cecil.

Mimi could have worked as she had a college degree and she was a highly intelligent woman. I am sure if Mimi had not literally lost her mind to schizophrenia, she would have been a very good teacher. I will never forget having a conversation with my brother in our family kitchen when we were teens. We had just seen Warren Beatty's movie "Reds" and Mimi startled us both by adding a lot of correct historical information about the Russian Revolution. It startled us because she was so terrified of communists, yet she calmly explained Russian history to us that morning and for many years, we did not know she was quite insane.

Mimi and Cecil liked their routines, even if some of Mimi's were, well, crazy. Each and every year they gave me and my siblings small boxes of Whitman Samplers chocolate. They were meticulously wrapped and we knew what they were before we even opened the small boxes.

I find it sweet that they bought these small tokens for us. I find it terribly sad though that the dairy in the milk chocolate most likely made me sick, and probably my siblings as well.

Once you know you have an abnormal reaction to something as ever present as dairy or gluten, you learn to treat everything you want to eat with a degree of suspicion.

It is telling that the very foods my grandmother Mimi loved the most were the very ones that inflamed her body and her mind. And she innocently gave us a small Christmas gift every year that did the same to our bodies . . .

I believe that for the first time in my 44 years on the planet, I did enjoy a gluten-free Christmas. It wasn't as hard as I thought it was going to be. I do have the advantage of having a loving in-law family that went out of their way to make sure those of us who can't eat gluten had plenty to eat. I am sure I gained the required poundage over Christmas, even without eating all of those yummy Christmas desserts full of gluten!

I found it harder to avoid dairy products than I did to avoid gluten products. Luckily I can take a lactose digestion aide if I think I have had any dairy. I did not think I had a dairy problem but discovered -- oh joy! -- that I feel like I do after eating gluten, which is generally terrible. I do know that researchers are working on a digestion aide that we might be able to take in the future that will work on gluten the same way the dairy-free pills work on lactose.

I hope you did not get glutined over the holidays! I hope you felt what I felt which is a general sense of well-being and no gluten hangovers.

Tuesday, December 22, 2009

Wrap yourself from head to toe in bubble wrap and get an IV for your water intake.

Simple as that!

Not practical?

How about staying in bed from November thru January 1 with the covers pulled over your head?

No, won't work either, you say?

Alrighty then, here are some phrases you might want to rehearse in front of the mirror so they become second nature to you and you don't glare at too many people when you repeat them for the 100th time:

Sunday, December 20, 2009

Do you have a Whole Foods store near you? If yes, you are in luck if you are tired of navigating thru the countless food choices to find gluten-free food because Whole Foods is a Godsend!

My husband, Jeff, and I live a good 30 minutes from anywhere in a small Texas town but today we got brave and ventured out to a north Austin Whole Foods. That grocery chain did start in my home town, btw, so we really love Whole Foods for many reasons. We didn't stay long because it was so packed and they did not make the aisles big enough, really, for carts but we stayed long enough to locate the gluten-free bakery section.

We are now feeling the effects of a sugar high after consuming chocolate cupcakes (with great icing!!), peanut butter cookies and chocolate cookies. It's been so long since we had food like that in the house that we went a little nuts. It was all gluten free so at least we know we won't have a gluten hangover tomorrow!

The desserts are REALLY good and taste like good ole gluten-filled regular treats. The brand name is the "Gluten Free Bakehouse."

Go out and get something really decadent that is gluten-free! It will help you get in the holiday spirit and not feel so left out of what the "normal" folks are eating!

Saturday, December 19, 2009

We ARE grain gluttons. Not just wheat -- we eat too much corn, rice, etc.My maternal Grandmother Mimi spent three-fourths of her long life living with the condition called Paranoid Schizophrenia. You have surely heard of it and know that if you have it, your mind plays tricks on you and you can have hallucinations and live in a great deal of fear.

Mimi loved her wheat toast, more than anyone I have ever known. She was severely anemic, which points to not absorbing nutrients in the gut, which points to a big problem with gluten. I think she also had a thyroid condition and the end result of not getting the right amount of thyroid is: paranoid schizophrenia.

I am hypothyroid, which means I do not get enough thyroid in my cells. I am thankfully on the right medication and have been able to get back on my feet and off the bed, where I spent nearly a year before I found the right doctor to help me help myself.

Along with cutting edge M.D.s, I now wonder: which comes first, an autoimmune problem such as a thyroid condition or a problem with gluten that results in an autoimmune condition?

I put my money on the gluten problem. It has been linked the following:

Friday, December 18, 2009

Yesterday, it felt good here bashing the countless doctors who, in a word, suck.

I could write a blog every day for about 10 years dissing the doctors who did me harm. I could write for days about the depressing things I know some doctors tell their long-suffering "fatigued" patients. And I will in future post share some of those things bad doctors say not only so you can be on the lookout and steer clear of that kind of doc, but also because some are so awful they are funny. Those of us who have chronic health conditions do often need a hearty laugh and there is a lot to laugh about in the medical care community. We get so much bad health news in our lifetimes that a good chuckle at our condition goes a long way.

Today I want to applaud the doctors who DID listen to my symptoms and who DID NOT just wave away my real health concerns and hand me a prescription for an anti-depressant. The first doctor I found in Austin is a true thyroid/hormone expert. He spends at least an hour with me every time I see him. He tells me in medical terms why my body is failing here and there and how -- as a team -- we are going to improve things. He gave me my health back and therefore my life back.

I learned about him from complete strangers on a Yahoo thyroid support group. Those ladies were the first to hear me and share with me what was causing my ever-growing list of symptoms. Thank you Darla, Janie and the other wise women who continue every day to help patients heal themselves. I'd still be bedridden if it weren't for you!

I'll talk later on about the other two doctors who were compassionate enough to really hear what my symptoms were telling them. I just wanted to say there are a few excellent doctors out there and there are hundreds of on-line communities where you can join up and get help from people suffering the same fate as you are.

I love this site in particular:

www.stopthethyroidmadness.com

Here is a link on that site that keeps track of the great doctors:

http://www.stopthethyroidmadness.com/how-to-find-a-good-doc/

If you have a problem with gluten and you continue to consume it, you can be fairly certain that a thyroid problem is in your future.

Thursday, December 17, 2009

Have you heard this little nugget that some doctors are taught in medical school?

Let's say you are a middle aged woman complaining to your doctor about feeling fatigued. He will more than likely write you off by saying, "Well, little lady, why would you not be tired? You have a full time job and 3 children." To which I want to yell back "YOU, doc, also have a full time job and 3 children yet you seem to have no lack of energy."

What your doctor is thinking -- and may actually have the gall to say to you -- is this:

"You have the Four F's: Female, Fat, Fertile and Forty."

If "whining" began with an F, they would have their own 5 F's. Many doctors see a person complaining of fatigue as nothing more than a whiner.

By telling you "it's all in your head" or "it is normal to be tired," your doctor is being a horrible doctor. He/she is ignoring a valid complaint. He/she is patronizing you and is giving you the distinct feeling that you are wasting his/her precious time.

It is NOT normal to have bone pain, joint pain or so much fatigue that you have to crawl out of bed in the morning. If a doctor tells you this, FIRE that useless M.D. They can be fired. I have become quite skilled at firing doctors and have even fired doctors for my friends who were too sick to do so.

If you insist on returning to a doctor who ignores your symptoms and one who attempts to give you pills (RUN if they tell you that you just need some Prozac and you will be a-okay)to "help" your fatigue, you have my permission to add the 5th F to your doctor's repertoire:

F**K YOU!

As you can see, once I got my health back, my feisty nature returned with it.

Be feisty about your health. That can be your 5th F if you are too lady like or too much of a gentleman to use my preferred F above.

Wednesday, December 16, 2009

I have a lot of issues with modern medical "care." One thing I despise are incorrect little sayings that are taught to future doctors while they are in medical school. One you hear a lot nowadays is "when you hear hoofbeats, don't look for zebras." They are told to look for the more common horse. They are often taught that a "rare" disease like Celiac's Disease is not something to look for because it is so rare, it is a zebra.

I beg to differ. I would imagine that the other 140 million Americans suffering from gluten toxicity agree that so-called zebra diseases need to be on the medical community's play list. More people suffer from Celiac's than Multiple Sclerosis or Diabetes.

There is a HUGE ZEBRA in the room, doctor!

My 3 long pages of worsening-by-the-year symptoms were shrugged off by my less than bright endocrinologist. I could have been helped as a young child as I had enough symptoms of gluten intolerance even then.

My Grandmother Mimi was not only never helped by the medical commmunity, she was prescribed drugs and treatments for her schizophrenia that made her condition wrose.

Mimi was on the earth for 76 years. For at least 46 of those years, her mind was convinced that everyone from the Beetles to the Communists were out to get her. She had osteoporosis, was severely anemic and I suspect she was hyperthyroid.

All of those symptom scream out: Gluten Intolerance. Yet not one of her doctors nor one of mine thought about the zebra in the room.

As far as I am concerned, gluten is the devil. I believe gluten made my Grandmother Mimi lose her mind. I believe it nearly ruined my body. What it is doing to you and your family? Nothing good.

Gluten is the main storage protein found in wheat. Gluten is that which remains after the starch granules are washed from wheat flour. Barley and rye also cause problems as they have a similar protein. Some of us have a gene that is passed down through the generations that make us intolerant to gluten. Others just get too much of it and their systems are overloaded. It does horrible things to a body and worse things to a mind.

Some of us have "gluten intolerance" or "gluten sensitivity" which basically means we have a lot of trouble with gluten and it is the root cause of many health issues. The disease associated with gluten intolerance is called Celiac's Disease. It is an abnormal reaction in the gut to a normal food substance. The health problems may start in the gut thanks to poor nutrient absorption issues, but that trouble is soon enough spread throughout the body.

Celiac's Disease and gluten sensitivity were always thought to be rare, but that has not been true for generations. It has been estimated that 140 million Americans have an issue with gluten.

If you are from a northern European lineage, that's bad news for you as it relates to gluten. The outer edges of Europe added gluten to their diets the most recently and thus we have a harder time digesting it. In addition, gluten is put into so many food products that you basically have to become a food sleuth to avoid eating any of it.

True Celiacs can become gravely ill with as little as 1/4 a teaspoon of gluten.

Monday, December 14, 2009

Mimi's given name was Johnie Virginia Dossey. She in born 1915 in Texas. I remember my own mother calling her mother "Johnie V," and never heard her refer to her mother as "Mom." That is funny and depressing all at once as I do not call my mother "Mom" either. We are a family that has been rather un-mothered for three generations, perhaps longer. I have no idea how to mother humans and that is exactly why I never got around to having them.

Mothering, it seems, has been lost to my family.

Mimi graduated from a woman's college, back when that was practically unheard of. She was scary smart. She was the only child of a loving couple we kids called Daddy Bill and Big Mamma. Big Mamma was actually a tiny lady . . . until her later years when she packed on the weight and succumbed to dementia.

I'll write more later about Daddy Bill. He was the one physically healthy person I can recall in my family. He lived to be 103 years old and he did that back in the 1980's, before we really knew we could all live that long.

The Dosseys have been traced back to a Scots-Irish heritage. Having a northern European descent in an important thing to do know about my grandmother and me as it relates to health woes.

Sunday, December 13, 2009

My maternal grandmother -- whom we called Mimi -- loved to eat toast. Lot's of people like toast, I presume, but I have never met anyone who enjoyed their toast the way that Mimi did.

For breakfast, she would carefully select two slices of wheat bread and slowly, judiciously apply butter. Actually, she always called it oleo. Once the oleo was just right, she placed the two pieces of toast in the oven. She had a toaster but preferred her toast to be baked in the oven. She liked things a certain way and she never wavered from this toast-making ritual.

Mimi would hover in the kitchen, constantly checking on the status of her toast. When it looked just right, she would remove the toast from the oven and gingerly put one piece on a plate. Then she would eat the toast and I swear to you, she looked like a toast addict getting her daily fix. In hindsight, that is exactly what was happening.

She would save the other piece (in the oven, with the oven turned off) and have it as an afternoon snack. Mimi performed this toast ritual every day of her life.

Saturday, December 12, 2009

In short, no. I don't appear to be crazy and the most excellent psychologist I saw for a few years in the 1990s never intimated that she thought I was crazy either.

Have I done crazy things? Yes. Have you? Yes.

When your own grandmother is certified crazy, it is perhaps normal to question, at times, your own sanity. When other family members behave as if they were crazy, you question again. I do feel confident that I am not currently crazy. I could have ended up that way, though.

Instead of mental breakdowns, I have been saddled with physical deteriorations that include "brain fog" and a little ADD on the side. I am hypothyroid (too little thyroid hormone) and gluten intolerant and my adrenal glands are kaput. I also started having menopause symptoms at age 30.

I find it telling -- and interesting -- that my stress hormone levels are nearly nonexistent and I have to take medicine to pump back in the cortisol that my crazy life has eaten away.

For some lucky reason, my body started falling apart but my mind stayed together. My grandmother Mimi lost her mind and her bones weakened to the breaking point.

Mimi was my maternal grandmother. I should say, rather, that she still is my maternal grandmother, though she has that role in my life from her vantage point of being deceased. Just because she is dead, that doesn't make her not my grandmother.

Mimi and I were not close and there is a reason for that. She is dead, and there is a reason for that too; I mean a reason beyond the idea that we will all die, one day.

Mimi was crazy, literally. She was a paranoid schizophrenic. She didn't have a mild case either, if such a thing exists. For example, if she heard a Beetles song playing over the super market sound system, she'd begin screaming and run helter skelter for the door. She was certain that the Beetles were out to get her.

I am writing about her to try to make sense of my own life, and hers. I believe I know why she became so mentally ill. I hope in telling her story -- and my own -- that the two of us can provide answers for others who suffer from their own minds (and bodies) that fail them or even stalk them, as Mimi's mind did to her.